Hormones, Hashi's And Celiac- How Does This All Work Together?

[icelandgirl]

Hi Kim and welcome...

 

The thyroid issues are such a pain!  If the thyroid is working well, all is good...if it's not, it's a nightmare.  I've been having this weird tingling in my feel and fingers the past 3 days and I'm wondering if it's related to the thyroid.  Too much med?  Not enough?  I don't know.  I'd love to get this thing nice and stable!

 

As far as generic or name brand.  I'm not sure on that.  When I was first diagnosed I was put on Synthroid, but it gave me heart palps...not good.  I was switched to Levoxyl and did well on it.  Then there was a production issue with Levoxyl and I was switched to generic.  I've heard that Levoxyl is back and it's gluten free...I'm thinking I will ask my endo about switching to that when I see him at the end of the month.  See if that helps somehow.  A friend who has Hashi's says that she can only do the name brand.

 

I really hope that you start feeling better...always get a copy of your results so that you can see what your levels are.  I never did that until recently and I wonder where my #'s have been when all my old GP used to do was have the nurse call and say your #'s are fine.

[karoyse]

Hi Kim and welcome...

 

The thyroid issues are such a pain!  If the thyroid is working well, all is good...if it's not, it's a nightmare.  I've been having this weird tingling in my feel and fingers the past 3 days and I'm wondering if it's related to the thyroid.  Too much med?  Not enough?  I don't know.  I'd love to get this thing nice and stable!

 

As far as generic or name brand.  I'm not sure on that.  When I was first diagnosed I was put on Synthroid, but it gave me heart palps...not good.  I was switched to Levoxyl and did well on it.  Then there was a production issue with Levoxyl and I was switched to generic.  I've heard that Levoxyl is back and it's gluten free...I'm thinking I will ask my endo about switching to that when I see him at the end of the month.  See if that helps somehow.  A friend who has Hashi's says that she can only do the name brand.

 

I really hope that you start feeling better...always get a copy of your results so that you can see what your levels are.  I never did that until recently and I wonder where my #'s have been when all my old GP used to do was have the nurse call and say your #'s are fine.

Thanks Icelandgirl,

   I have been having that tingling too so it might be your meds aren't strong enough. I just amazes me just how many things can get messed up when you thyroid medicine isn't working right.

The worse part is family and friends just don't get it.  When you feel the walking dead its really hard to do and be the person you want to be or they want you to be. My husband is full of life and is 2 years older then me. When  I was DX with celiac's two years and my thyroid meds haven't been right I know I haven't been the same. Like I said I wouldn't wish this on my worst enemy but it might help to get a litte understanding if some of my family could be in my shoes for a while just to see I'm dealing with.

 I guess thats why this post caught my attention seems like most of you have been dealing with it. I guess what I'm saying it nice to not feel all alone and I'm not the only person going though all this.

I  felt like the weight of world lifted off me when my new Dr. told me what was really happening. Same with finding out I had Celiac's 2 years ago. . I had been to so many different Kinds of Drs . before I finally went to a gastroenterologist. because I was having trouble breathing and sleeping at night because of GERD. My husband was getting upset with me . I told him I need to find out what was happening to me to make me feel so bad. If he didn't believe me  to make sure they do an autopsy on me when I died then he will see something was really wrong with me. I had him go with me to find out the results of my 4 different scope. Not that I wanted what I found out but it least I got some answer's and so did my husband. I have Barrett esophagus ,Hiatal hernia, Gerd  Celiac's . Plus menopause hell. Then my family Doctors lowers my Thyroid Meds when they should be raised.  OMG

I had no idea what Celiac's was. Boy was I overwhelmed. 2  years later I think I have my Celiac's under control .It just my family likes to eat out a lot, They really think I am being a pain when I ask  question's  from the waiter or don't want to go with them because I know the

place they want to go doesn't have any Idea what Gluten is .

Now the new Dr say I might also have Hashimotos too . What is that and can I have that if my whole thyroid was removed? .Another Dr. told me I had Fibro now this Dr. doesn't think I do.

Sorry if I sound angry but I guess I am . I just want to feel good again. I kept thinking it was all just old age but I see other people older than me and they are getting along a lot better than me.

This has been a crazy few years and I feel like maybe now I have some Idea what I dealing with. I can get back to enjoying life more.

Thanks for posting the info . it has helped me a lot.

Kim

[icelandgirl]

Hi Kim...interesting on the tingling.  Does it annoy you as much as it does me?? 

 

Hashimoto's is autoimmune thyroid disease.  It's fairly common it seems for celiacs to have both.   Your thyroid was removed?  Then I don't know if you can have it or not.  I'm not sure how that works.  Without a thyroid to attack I would think the Hashi's would go away, but I am no expert on this for sure.

 

It sounds like a very frustrating time for you.  ((Hugs)).  Having celiac can certainly be.  The thyroid stuff is just crazy.  It affects everything.  Until my thyroid med was raised in July I was having issues with night sweats before my period...since going to the new level they've gone away.  So, I really think it was thyroid related. It's so sensitive too...getting things regulated can be very difficult especially with Hashi's.  Hopefully once your thyroid is regulated you will start feeling better. 

[icelandgirl]

Hey Nicole, Gemini, CyclingLady and all others who know more about the thyroid than I do...which is most of you!     

 

I've had this tingling in my feet and fingers(at times) the past 4 days.  10 days ago I was feeling all jittery, trembling fingers and such so I went to my lower dose of thyroid med.  Could this tingling thing be not enough thyroid med?  Still too much?  Or is something else going on altogether?  Love your thoughts as always.  Thanks!

[cyclinglady]

If you extend your arms out straight in front of you and you seek trembling, you could be running hyper (my doc does this simple test besides listening to my symptoms and ordering lab work).

Tingling? That is tough. It can be related to diabetes or celiac disease. Not sure about thyroid as I never had this symptom before my celiac disease diagnosis. My leg tingling improved for a while after going gluten fee and when I started managing my diabetes. My finger tip numbness really improved on my diabetes diet too. But in August, my symptoms came back. It is not a Vitamin B-12 deficiency as mine tested extremely high. My TSH has been creeping up. I take 90 mg of Armour daily and toss in 30 mg. on top of the 90 on the weekends. Just last week my new doc added another 30 mg. on Wednesdays. I am not testing my blood sugar after every meal anymore. Maybe too many carbs giving me spikes. Spikes over 140 can cause diabetic neuropathy (tingling). But I kind of doubt it since I am so diet compliant.

The only thing I have done differently in August was to consume lots of cheese and some cream. I was diagnosed as having a milk allergy when I was young. Runs in my family too. No stomach issues after I re-introduced dairy, but my sinus congestion and these body aches, tingling got so bad that I gave up milk again. My theory is that I am no longer lactose intolerance (celiac disease healing) but that I still have a milk allergy to casein. Waaaah!

Or maybe just another autoimmune disorder is staring up. I hope that I do not go back to thyroid swings! I was a mess back then.

I wish I had more answers!

[icelandgirl]

I'm not trembling now...but like 10 days ago I was...so I switched from my 112 mcg to 100 mcg. But that wasn't enough before so I'm wondering if that'd the case now. Today I took 112. I really don't know. A friend of mine has Hashis and she has had tingling and numbness when her meds have been too low. I'm trying to go with that for now. I'm due for blood work in 2 weeks and seeing the endo in 3. I really don't want something else to be wrong so I'm just hoping this resolves. But it's discouraging...really feels like it's always something. If you figure out anything...let us know.

[GF Lover]

Hi Ice Girl.

 

It concerns me that you are changing how much med your taking.  Is this under a Doctor's direction?  If not, you may cause inaccurate readings on your blood tests.   12 mcg may not seem like a lot but it is.  The body cannot adjust this quickly.  It can take some time to stabalize the thyroid.  Please do not do as your friend does.  We are all different.  

 

Colleen

[icelandgirl]

I hear you Colleen. It wasn't under my Dr's direction. It takes a while to get in to see him so I decided to try this.

[cyclinglady]

Colleen is right. The dosage I am taking is prescribed by my doctor. She even wrote new instructions for that additional 30 mg on Wednesdays and I have a lab recheck in six weeks. It takes time for your body to acclimate to a new dosage. Even with my wild swings, I did not change dosage with out a new lab test/doc consult.

The danger of over medicating could result in heart, eye and bone damage.

I can tell you that my legs have been throbbing and tingling now (past year), but I never had that symptom before and I have had Hashi's since 1997. Do not assume it is related to Hashi's. Once I was really fatigued and I went in to my doc to request a Thyroid panel. I was sure I needed an increase. Turned out that that my hemoglobin had dropped. My thyroid was okay at that time. It is hard to guess. My best defense is to be educated but work with my doctor. Together, we can solve my health issues.

[icelandgirl]

Ladies...I hear you. I messed up. I called the endo and they had a cancelation at the end of the day. I'm going in. My actual prescription is for 112 Monday-Saturday and half of a 112 on Sunday. When I was feeling jittery I guess I thought I could try it...Instead I messed up. :-(

[cyclinglady]

Ladies...I hear you. I messed up. I called the endo and they had a cancelation at the end of the day. I'm going in. My actual prescription is for 112 Monday-Saturday and half of a 112 on Sunday. When I was feeling jittery I guess I thought I could try it...Instead I messed up. :-(

It is okay! We care about you! And I completely understand your desire to feel better.

[GF Lover]

Ladies...I hear you. I messed up. I called the endo and they had a cancelation at the end of the day. I'm going in. My actual prescription is for 112 Monday-Saturday and half of a 112 on Sunday. When I was feeling jittery I guess I thought I could try it...Instead I messed up. :-(

We live and learn hun.  Glad your getting in today.  If nothing else it will give you some peace of mind  Like CyclingLady said.  We care!  

 

Colleen

[nvsmom]

I'm glad you got in to see your endo.  

 

I have trembling but I doubt it is related to my thyroid issues.  I've had this for years and it's actually become a bit worse after I began treating my hypothyroidism - it's almost embarrassing to hold a fork in front of people now.  LOL

[cyclinglady]

I'm glad you got in to see your endo.  

 

I have trembling but I doubt it is related to my thyroid issues.  I've had this for years and it's actually become a bit worse after I began treating my hypothyroidism - it's almost embarrassing to hold a fork in front of people now.  LOL

My Dad has that. It is genetic. Several of his siblings have "Bobble Head Syndrome". Nothing to worry about.

[icelandgirl]

I'm glad you got in to see your endo.  

 

I have trembling but I doubt it is related to my thyroid issues.  I've had this for years and it's actually become a bit worse after I began treating my hypothyroidism - it's almost embarrassing to hold a fork in front of people now.  LOL

Thanks for the support Nicole. Definitely in need of it right now. Feeling discouraged.

[nvsmom]

Thanks for the support Nicole. Definitely in need of it right now. Feeling discouraged.

(((HUGS))) Thyroid issues are so tough because you have to keep tweaking things, in long 6 week or so increments. It's not like celiac disease where you stop the gluten and eventually things get better.  I was past my 10th month of treating my thyroid before I started feeling better... enduring poor health when the end is in sight is really hard on a soul.  

 

You'll get there.  You're on it and not letting things slide so I have no doubt that you'll get there.

[nvsmom]

My Dad has that. It is genetic. Several of his siblings have "Bobble Head Syndrome". Nothing to worry about.

I'm not to worried about it - I just feel that 40 is too young to quake sometimes.  LOL  Coffee or sugar doesn't help it at all.. Hmph.  

[icelandgirl]

Awww...thanks Nicole. (((Hugs))) back. The thyroid is tough. Got quite the lecture from my endo. Sigh...I feel like I got in big trouble! Lol. Learned a lot from this...will not be changing my meds on my own again.

[beth01]

You having some thyroid issues too? I went to the doctor to get my level checked and holy moly, it was 16. No wonder why my muscles hurt lol. Dosage change and 6 week check up. Hopefully yours gets better! Are you feeling better other wise or still having more bad days than good?

[icelandgirl]

You having some thyroid issues too? I went to the doctor to get my level checked and holy moly, it was 16. No wonder why my muscles hurt lol. Dosage change and 6 week check up. Hopefully yours gets better! Are you feeling better other wise or still having more bad days than good?

Yup...and when that thyroid is off it really messes with you doesn't it? I hope your med change helps quickly. I'm doing pretty well...more good days than bad now. How about you?

[icelandgirl]

Hey all...I'm hoping I can get some thyroid experts to analyze my latest bloodwork.  Had this done on Friday and will be seeing the endo in 3 days.  I also asked to have my iron checked because I'm always cold, losing hair and tired and thought it could be that or thyroid.  Any advice is always appreciated.   The good news is that my D is slowly creeping up...it's at 33 now. 

 

This is on 100 mcg of levothyroxine...

 

TSH:  .      .727      .45-4.5

Free T3:    2.1       2.0-4.4 pg/ml

Free T4:   1.5        .82-1.77

 

Iron:         57   35-155 ug/ml

Ferritin:   15   15-150ng/ml

% Saturation: 16%   15-55%

[Solandra]

The only relation in the actual scientific medical literature that I've personally found is that the general population has a Celiac rate of about 1% while the Hashimoto's population has an occurance of about 2-4%. So the likelihood that you can have Celiac is about 2-4x more likely if you have Hashi's... BUT! That's still only 2-4 people out of 100! So, if anyone tells you that all patients with Hashimoto's need to avoid gluten, they're part of the Quack Brigade and also they are making people really confused and screwing things up for people with actual Celiac and gluten issues. That's the problem with something being trendy.. not all people need to avoid gluten, it's not poison. Stick to real studies and avoid anything put out by a Naturopath or Dietition. You'll save yourself a lot of money and trouble.

 

Open Original Shared Link

[nvsmom]

I went looking to see how your tests compared to the past and pasted it here for ease.  This is from August - you were on 112 mcg then?

 

Name                                          Value   Reference Range

TSH                                              1.300    0.450-4.500 uIU/mL         

T4,Free(Direct)                            1.38      0.82-1.77 ng/dL

Triiodothyronine,Free,Serum         2.2      2.0-4.4 pg/mL

Reverse T3, Serum                       24.7     9.2-24.1 ng/dL

Triiodothyronine (T3)                     85       71-180 ng/dL

 

It looks like your FT4 went up a bit but your FT3 went down.  That's not great - you're almost out of the normal range now.  Even though your TSH is a bit down, you have less active hormone (FT3) circulating. It makes me think  you might want to try upping your levothyroxine dose to 125mcg, or maybe try some other T3 supplement like Armour.

 

Your past elevated RT3 makes me suspicious that it is making managing you thyroid harder than it should be.    Your FT3 needs to come up a bit.  If I were you, I would aim to get it above 3.2 if you are able.

 

The cold, tiredness and hair loss sound like you are still hypo although it could always be caused by something else. I tend to lose hair when my meds are changed, or when I feel off... I'm never quite sure what causes what. It's hard to juggle your health when you have a few known problems to manage.

 

Take everything I advise with a grain (or tablespoon) of salt.  I'm not a doctor, and I can't find many doctors who agree with my thoughts on thyroid management.    LOL

[icelandgirl]

Lol Nicole! I know...that FT3 is really low. I was bummed. The first set of numbers I was on 112. I'm fairly sure my endo will want to reduce my meds not increase them. I really wish that T3 had worked for me. I'm not sure what to think about Armour or anything else with T3 since I had such issues before. Previously he had mentioned going to the compounding pharmacy and having an even smaller dose of T3 made for me. The smallest available is 5 mcg and even cutting it in half was too much for me. But I know that FT3 needs to come up.

[Solandra]

The problem with treating FT3 is it changes every day. My Endocrinologist doesn't even bother with it since it's varies so widely.